Is it time to try Spinal Cord Stimulation?

[alastair70]

Hi All, This is my first post on this forum so a bit of background. Thirteen years ago I had my bladder and prostrate removed due to Bladder cancer and had a urostomy created, (which is an plumbing system that ends up with a external pouch stuck to my abdomen which i change every few days where my urine collects). I have had another 13 operations since 2002 mainly for hernias around the site of the urostomy which has left my stomach looking like a motorway map of the UK lol. I should also mention that in 1992 I had L4 and L5 discs removed after they had shattered

As a result of all these surgeries i have suffered from chronic pain of my abdomen for 5-6 years and have been under the care of my local pain clinic for four years now. We started with medication, Paracetamol, Gabapentin, Pregablin, and last year we added Targinact, we got to a stage of using 3 times (3600mg a day) the "normal" GP dose of Gabapentin. We have since stopped gabapentin which has increased my pain by 10-15% but weirdly improved my sense of smell 100%

My pain consultant says, that i have a combination of scar tissue damaged nerve endings and mesh from the hernia repairs all melted and mingled together which have created a welded mesh of pain.

I have so far had 45 RF treatments to try and find "the nerve" that is causing the pain to no success. (RF is radio frequency treatment, using a portable x-ray machine and a ultrasound machine the insert a needle to find a "good spot" i.e. really really painful, then the add a bit of local anesthetic and insert the RF neddle which is then heated to 70-80C for 45-60 seconds.)

The most I've had from the RF treatments was a couple of weeks of slight reduction in pain but only 10-15% reduction, so unless i want to add RF treatment to my list of hobbies as my consultant said to me recently it is time to think of something else.

In a way i feel reasonably lucky as my consultant, though a little wacky at times really does care and want to help, though his waiting lists are rather long, he is more than happy to reply to my emails and has recently told me that i should take the time to research SCS (spinal cord stimulation) as this seems to be the next step in my treatment. When he first suggested it i just thought no way, it's too scary, not for me, but after a day's reading I'm more confused than before i started.

So I found this forum and thought I'd give it a try, I'm hoping to find some information/advice from people who have had the implant, does it work? Has anyone had it for abdominal pain rather than back pain? How much reduction of pain does it give? etc etc

So thoughts & advice please,

[badbackjonny]

Hi.

I had an scs fitted back in September last year for back/leg pain. When I was in there were 2 people having them for abdominal pain.

The first thing you need to know is that they don't just go ahead and put the full implant in and hope it works. They start by putting a trial version in. Which is just a lead under local anaesthetic.

This takes about half an hour and is nothing really.

You will have that for 4-6 days then it will be taken out. Again it's nothing to come out. They put 2 stitches in me and that was it.

If it works they will put you on a waiting list for the implant.

That is a big operation but you should be out of hospital in under a week.

Then you will be looked after by the neuromodulation team who do all the programing of the implant. Everyone is different with this. It's taken me 6 months and it is just right. (but I have now broken it with a fall).

But I would recommend going for the trial if you get the opportunity. It's a week of your life and could end up changing it for the better.

Best of luck.

If you want any more help please feel free to contact me. I'm always happy to help.

J.

[alastair70 in reply to badbackjonny]

Thanks for that, I spoke to the lead nurse of my pain team and she suggested I speak to someone at the Walton Centre in Liverpool.

I spoke to a research sister and although there are no trials that I am suitable for currently she suggested I get referred to one of the consultants there. Apprantly the Walton centre is world renowned and the best place to go outside London.

Seeing as its only an hour away and their waiting time is only 6-8 weeks I feel like I've made a bit of progress for the first time in ages.

They do all sorts of research trials and you can just phone the research centre and someone will phone you back and see if you are eligible for any.

I'm still hoping to find one or two people who have had SCS for their abdomen, but the more I look the more good and bad stories I read, it is really 50-50 as to if SCS works!!

[badbackjonny in reply to alastair70]

I asked my GP to reffer me to Dr Ganti there. I had done my own research and his name kept coming up. He is one of the pain specialist there. See if you can get an appointment with him.

Best of luck.

Jonny.

[alastair70]

The research sister suggested a Dr. Frank so going to try him first, I just wrote a post about the Walton Centre for those who don't know about it.

healthunlocked.com/painconc...

[badbackjonny in reply to alastair70]

I can't help there. I've never come across Dr Frank.